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  • Hydrodistention Conference In Houston

    I went to the conference in Houston yesterday and it was very informative. They did a study with 50 women who had no symptoms of IC and performed a hydrodistention on them. They found that 70% of the women showed the
    petechial hemorrhages, glomerulations, etc. That is very interesting. It makes me wonder if doing the hydrodistention can cause more problems?

    The conference had some great speakers but my favorite was Dr. Brookoff from Denver. If I lived close enough he would be my doctor. He seems like the most compassionate man. He is like House with a sense of humor

    I am hoping to have more conferences in this area soon.
    Miss Bessie

    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

  • #2
    An IC diagnosis is made based on several things --- symptoms, ruling out other possibilities that might be responsible for the symptoms, sometimes a potassium sensitivity test, and sometimes a hydrodistention with biopsies. The hydro isn't the single test to diagnose.

    Donna
    Stay safe


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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

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    • #3
      I got diagnosed with the hydrodistention but I thought it was very interesting that they did a study on women who were going in for other surgeries, tests, etc. and when they did the hydrodistention they saw the petechial hemorrhages with 70% of the women. I was just curious if the test is what caused the bleeding? Any thoughts??
      Miss Bessie

      Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

      Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

      Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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      • #4
        Honestly I think like with so many other things doctors just don't know. I have heard that a lot of doctors now are using just the PST to dx IC but my uro thinks that it isn't sure fire because some people who don't have IC will respond to the PST and some people w/ IC won't respond to the PST. He thought that the hydro was considered the "gold standard" but he even admitted that it's not full proof either and he said that some people w/ IC will look normal during the hydro (I did, I didn't have any of the pin point bleeding at all, he only dx me once he saw all the mast cells in my biopsy) and obviously from this study some people who don't have IC will look like they do. As Donna said obviously they go on symptoms as well, I gave my uro a couple of days worth of voiding diaries, several days w/ just times and 24 hours w/ times and amount. I think it was all the pieces coming together.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

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        • #5
          I agree with you. IC is so different in everyone. I guess that is why it is so difficult to treat in some and easier with others. I just hope that some day soon they will find a cure and we won't have to suffer any longer.
          Take care
          Miss Bessie

          Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

          Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

          Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

          Comment


          • #6
            Many docs now think that IC might be a cluster of different disease states... meaning in different people, different things are triggering the bladder symptoms... and since we don't know what those "things" are, we are just throwing everything but the kitchen sink at each and everyone. It's possible someday we'll know exactly what causes everything, and can tailor the treatment to the person. That'd be good

            I agree with you about Dr. Brookoff too. Great guy. I lived in Memphis, which is where he was before Denver, but he was just leaving when I was diagnosed with IC, so I never got to see him. I did, however, have a wonderful, compassionate urologist who took care of my every need at the time.... Now, though, I'd trade my own pain doc for Dr. Brookoff any day
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #7
              When I first started having IC symptoms last May, I had a urogyne who wanted to do a hydro on me. I went home and researched it well and also talked to my gyne about it and also my GI doc(he is the smartest guy). My gyne told me that they did do alot of studies with the hydro on people with and without IC. She told me back then that alot of the people without IC had a positive hydrodistention. SO yes, when they stretch your bladder beyond it's normal ability to stretch, you have a high chance to have bleeding or to have an irritated baldder lining show up and this is in the normal person without IC.
              I do know alot of people get relief from the hydro. I had a long discussion with my gastroenterologist about the hydro. He knew more about the test than some uro docs I have talked to( pretty sad huh?)
              He said that what they hope is that by doing a hydro it will interfere with the nerves and you will get less pain. But what they dont tell you is, if your nerves are very hypersensitive(mine are), you can have just as much chance that after they stretch your bladder, your nerves will fire like crazy instead of calming down and cause you even more pain!!
              This test is different with everyone. I think you have to go with your gut instinct when deciding whether or not to do the hydro. You know your body better than anyone. I just think that these uro docs need to be more upfront and honest about this test and how it does have as many bad outcomes as it does positive ones with patients. They need to tell you what can go wrong. They really also need to get to know a patient and their make up better before putting them through this test. My GI doc knows me very well and all the health issues I have. He said he agreed that I should not do the hydro as it would likely send me through the roof as far as pain in concerned. He knows I have a lot of neuralgia pain as it is and that my pain signals are out of whack and fire needlessly as it is.
              For some people the hydro is great and for others it can be a nightmare.
              Jen

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              • #8
                I went to a Kidney specialist last year and he belived that the Hydro causes the bladder to bleed. He said when you fill up a bladder like that it is going to bleed like the pics you have here.

                It seems each dr had their own opinions.

                I bled pretty bad after my hydro, and the one dr said it was due to my lyme disease that my bladder bled so badly.

                One day I hope they have a blood test or urine test for IC.


                Lyme disease diagnosed 11/05
                vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
                IC diagnosed with hydro/cysto- may 17, 2006

                Over growth of lactobicilli found 8/07 treating with doxy.

                Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

                8/22/07- was able to get my first speculum exam, with pap

                Strep D found in bladder with United medical labs May 2006
                2 strains of strep in stool culture 9/06
                high Strep ASO titre found 10/06

                NEW MED

                Capsasin cream-once a day for 20min,
                BUt wont lie it does burn

                About to start valium supositories for PFD

                Trigger point injections- oct 07

                Current meds:
                Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
                Zanaflex 2mg
                IC and low oxalate diet, no sugar diet
                Xanax for appointments to help relax me since they cause so much pain

                Started PT 3/07, PT has really helped me in ways I never knew that it would

                Meds ive tried
                Lyrica
                Klonopin
                Singulair
                Claritin
                Pyridium
                Soma- can barely tolerate half a pill
                Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
                Estradiol cream
                Urelle- caused worse bladder spasm and retention

                Various antibiotics for lyme which caused yeast and made the IC and VV worse

                waiting for the next chronic illness to pop up


                "Did you know?
                Every 15 seconds,
                a person is
                diagnosed with
                interstitial cystitis."
                Source: J. Dimitrakov, MD

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